Friday, June 7, 2013

Text of Linda Tannenbaum's Pre Conference Dinner Speech for Invest In ME Conference


Thank you to: Alison Hunter Memorial Foundation (Australia) and the Invest In ME (UK)!

There is a plan.

There is scientific agreement, well thought out by many scientists in this room.

Now we need to pool knowledge, data and financial resources to get this plan in motion.

The chances are small for a local or national focus; this is an International problem that needs an International focus.

To quote Helen Keller, “Alone we can do so little, together we can do so much”.

The theme is Collaboration and Hope to conquer ME/CFS, which I will call ME today.

For patients with chronic ME, what matters most is that research be translated swiftly into effective treatments.

For new patients that have no idea what is wrong with them, what matters most is an accurate diagnosis with specific biomarkers.

For the rest, what matters is not getting this horrible life-altering, debilitating disease in the first place.

Collaboration was missing 7 years ago, when our 16-year-old daughter was struck down suddenly at 8:20 in the morning on day while at school, with a mysterious illness that left her bedridden for a year.

As a desperate parent looking for answers, I attended several conferences and left the conferences without HOPE or any words spoken of working together, teamwork or partnerships.

Today, times have accelerated in the right direction and you, like me are part of this global effort to understand and find answer.

We all know that collaborative efforts and sharing data will shave years off the discovery and intervention required.


It is wonderful that there are many patient organizations and local support groups for the patient community and there are multiple institutions around the world doing research.

It is time to connect the dots. It is important to take this separated effort and share gathered knowledge and analyze the data collectively. We can all connect technologically to fight this disease.  I am convinced these answers are readily available if we apply the best resources in a large-scale, collaborative effort.  

I was asked to speak to you tonight to tell you about the collaboration that is already happening at the Open Medicine Institute and Foundation.

Last June, we had a phenomenal breakthrough. After a successful gathering of scientific experts in a 2 ½ day meeting NYC, the OMI-MERIT Initiative was born. The Open Medicine Institute-Myalgic Encephalomyelitis Roundtable in Immunology and Treatment.  The meeting was directed by Andy Kogelnik of the Open Medicine Institute and the MERIT plan now includes 27 scientists from 11 different countries, many of whom are here today. 

The result of the meeting was a Big Plan, a top TEN list of priority projects collectively decided upon by this International cohort, which we call the OMI-MERIT Initiative.  

This agreed upon comprehensive Plan is by far, the best solution and the best chance in the history of this disease to move forward to address the underlying disease process in ME with an emphasis on the role of infection, genetics and immunology.

As I sat listening in the meeting, I had hope for the first time that something might come out of this to help my daughter. Since many of you are part of this, I am honored and thankful to you and encourage all others to join the team and the open platform.

As some of you already know, the MERIT Initiative includes:


·      A 150-300 patient International Clinical Trial of Rituximab and Valgancyclovir.
·      A Registry and Biobank including an unlimited international registry and detailed 1000 specimen survey.
·      A Protein Panel study including over 250 patient samples to be run on a detailed array of protein platforms.
·      Several Mono and Combination Treatment Pilots
·      Two extensive Immunologic Biomarker Exploration Studies  
·      DNA Genetics Studies
·      Measurements to begin to establish an understanding of the contribution of nutritional and environmental factors to ME.
·      Comprehensive Viral Testing
·      Pilots for Natural and Over-the-Counter Substances

More details of the projects are available in the IIME journal and on our website.

After the MERIT meeting, Andy Kogelnik said to me, now that we have this Plan, we have to raise the funds to do this; will you do this with me?  

I said Yes, and last August we began.

We have the Big Plan; we have scientists that are already beginning some of this work and others that are ready to begin.

How can this giant step in understanding and cracking this disease be funded?

I will tell you where we are at so far. We are on our way.

We are grateful and excited to tell you about the specific projects that have been funded to date.  Since grants have been given for specific projects, we will start those first and others as they are funded.

The Open Medicine Foundation has received an extremely generous grant from the Edward P. Evans Foundation to fund the most extensive exploration of genes and their contribution to this disease.

Using newly developed techniques never applied to ME and collaborating with Dr. Ron Davis, one of the top investigators in the field of molecular genomics, this grant   will establish or refute a role for genetics in ME. The study will include investigations into the HLA regions of the genome, DNA methylation and other aspects as well as whole genome sequencing.

By the time the study is done approximately 1,000 ME patients will have taken part. The results will be available within the next 12 months or less.

Support has come from other donors in other fields as well. For diseases as complex as ME, we will heavily depend on IT support to collect, manage and analyze these huge amounts of data into actionable information. 

Another grant that the OMF received this month was from the VMware Foundation; VMware is a global IT expert in cloud computing. VMware has provided an exciting grant of financial and consulting support to enable the Open Medicine Institute to enhance the information technology platform, created by Andy Kogelnik called OpenMedNet.

This grant will enable the OMI to collect, share, and analyze hundreds of thousands of data points on individual ME patients. This already powerful “Open-Architecture”, enables seamless sharing of patient data (compliant with privacy rules and with patient consent).

I know that many of you have piles and piles of medical data, like I still have for my daughter.  Now you will be able to use the OpenMedNet platform for your own medical records and, if you choose, be part of research and allowing your data to be analyzed along with thousands of others.

The VMware grant will give the OMI the capacity to build a monumental registry.

Using OpenMedNet and funded by the CDC, Andy Kogelnik is continuing to collaborate with the top ME clinicians the US to look at patients in detail to see if and how diagnosing patients differed between clinics, to gather hard data to help address the issue of case definition, and to find the best ways of measuring this illness. In all 450 patients are in the study.

Another funded study that the OMI is setting up is a pilot study with an alternative therapy called Moringa oleifera.  This was something that I instigated and funded through my personal nonprofit, Neuro-Immune Disease Alliance, NIDA.  With a number of anecdotal stories of recovery with this substance, and the relatively low cost of doing a pilot, this will illustrate how low-budget science can also be beneficial in this field and needs to be done on candidate substances.  

I came here to London to tell you about the global collaboration that began with the OMI-MERIT Initiative and I stand before you now, telling you that we have a chance to find serious solutions to help you and your loved ones get their lives back.  For the first time ever, there is an Internationally agreed upon plan. There is hope. 

What will it take to move this forward.

The MERIT projects are budgeted at $13.5 million American dollars plus overhead. We already have over a million dollars towards 3 projects, 10-15% of what we need to accomplish the entire initiative. Since the CDC estimates at least 8 million ME patients in the world, then all we need is $1.56 American dollars more from each patient to close the gap to fund MERIT. 

In the meantime,

The OMI and the OMF are working hard to close the gap by applying for grants from government funds, industry, corporations, pharma, philanthropic and private foundations, the patient community along with patient advocates. Our website makes it easy for people to donate with just a credit card; we just had a college student donate $3,000 from a Volleyball tournament dedicated to her Aunt – an ME patient.  

At the Open Medicine Foundation, we are working on a number of prospective large Foundations that often fund medical research. We are continuing to pursue all available avenues in our effort to find funds.  All ideas are encouraged and welcome.

So what can you do Individually, with your patient organizations, scientific communities, friends, and family members.

There are two important ways you can help.

Number one, stand by us and join in raising funds to support this joint International effort. One BIG Initiative, One BIG Plan. Connect the Data on one platform. Let’s get the OMI-MERIT Initiative completed in less than 3 years and then see where it takes us next.

Number two and just as important, It is within your power to share your data, scientific and personal medical records.  The system is free and will be fully functional in summer with an easy to use platform to enter your data and answer questions if you want to share it, with all privacy laws followed.

There is a flyer in the journal that gives the simple instructions on how to sign up and then you will be emailed when it is ready.

We ask you to share it with your members for those of you that are leaders of patient organizations. 

We are encouraging as many people and organizations as possible to sign up to the OMF free e-newsletter or read it on line on our website, to give patients and loved ones HOPE on the progress of ME/CFS research, specifically, the OMI-MERIT Initiative and as projects come up, we will be able to reach out the patients and ask for their engagement if they choose to be part of the research, part of the solution.

The more data points, the faster the answers. Researchers sharing data, physicians sharing patient successes, patients sharing their history and organizations getting their members to join in the research effort as well as everyone doing what they can to help fund this world-wide effort, is the key to getting results in the shortest amount of time.

My personal greatest purpose and passion at this point in my life is to do whatever I can, to help find a cure, better yet, a prevention of ME.

I know that we all want this and am excited that I can leave this conference knowing that collaboration is underway.

5 comments:

  1. All this...

    and not a single one of them is interested in the VERY FIRST CLUE described in Osler's Web.

    How can they be so certain it is unimportant.

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  2. Thank you for sharing this, Chris. I, too, find it a hopeful development.

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  3. Thank you so very, very much for taking on this fight. What a great dad! We need more people like you, especially since too many of us are too ill to speak up for ourselves and aggressively make ourselves heard.

    I've had CFIDS/ME/CFS, fibromyalgia and all the problems that come with it (IBS, severe insomnia, hormonal deficiencies, immune problems, neurological problems, etc.) since 1975! I'm doing "worse" today. My brain is not up to taking in everything you're saying - not your fault, but mine. However, I was struck by your line, "find a cure, better yet, a prevention of ME." YES!

    I'm angry- outraged - that 37 years have passed since I started this unwanted journey. And here we are almost 40 years later and we have not made much progress. This is just so unacceptable. We are an advanced society with amazing resources. Can't we get some of those resources in the direction of ME?

    No one want to deal with us. We are just so complex. I try not to think about all of this because it makes me want to cry. And sometimes I do break down and cry - it's when I see that almost two generations later, "kids" are coming down with this nightmare.

    Sorry about the rambling - it's not a very good day for me cognitive-wise. But a huge thanks for helping all of us - in helping your precious daughter we all get benefits.

    I'm too depleted to do much fighting, advocacy. However, out of this frustration I did take up blogging about living and dealing with this monstrous illness, as well as, I hope, even educating those around us. I truly hope it helps people. My blog has at least given me an outlet and it's also giving me the feeling that perhaps there is a reason I'm so ill - that there is a purpose to my illness(s). I'm trying to make lemon-aid out of the lemons. And do as much laughing as possible.

    Sorry, I didn't expect to make this an advertisement for my blog. This is purely my reaction to what you've written. Thanks, again!

    Wishing you all the best.
    Irene

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  4. So I've finally found out what "OMI-MERIT" means!
    > The Open Medicine Institute-Myalgic Encephalomyelitis Roundtable in Immunology and Treatment.

    The OMI-MERIT flyer in the IiME journal is on page 35:
    http://investinme.org/Documents/Journals/Journal of IiME Vol 7 Issue 1.pdf

    Pre-register for OpenMedNet, here:
    https://www.openmednet.org/registration/MECFS

    Sign up to the Open Medicine Foundation newsletter, here:
    https://app.etapestry.com/onlineforms/OMF/contact1.html

    See the full list of OMI-MERIT research proposals, here:
    http://openmedicineinstitute.org/research-initiatives/mecfs-merit/

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  5. Thank you for your wonderful blog. It's comforting to know that there are able-bodied people out there helping us. The things I could do if I were healthy! I appreciate you.

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